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So, I recently read The Wordy Shipmates by Sarah Vowell, it’s about the folks who colonized New England in the 1630s. They were a bunch of well-meaning, but often destructive, ultra-religious book nerds. Their book of choice, the Bible. They were mostly Puritans. You work hard, go to church, read your Bible, you go to Heaven, that’s the gist of Puritanism. Some, however, were Calvinists. Calvinists make Puritans look like a bunch of happy-go-lucky, easy going, fey spirits.

Calvinists believed that before you’re even concieved, before your soul even enters your tiny new body, God has already decided whether you’re going to Heaven or to Hell. There’s no finding Jesus and getting saved, death-bed repentance doesn’t mean anything, God had it all figured out and He wouldn’t change His mind. So, why be good and study your Bible more rigorously than any Puritan, why be flawlessly pious if God has possibly already written you in His Going to Hell book? Well, they believed that people who “seemed” like good people, read the Bible, went to church fervently, raised kids to be pious, those people had souls that displayed all the signs of goodness and were PROBABLY scheduled for Heaven. Folks who were lazy, who couldn’t quote the Bible chapter and verse, who stole firewood during a hard winter, they behaved so because they got a Hell-bound soul. So, you ended up with a bunch of uneasy, sometimes terrified religious zealots desperately trying to “look” good.

One woman in town was particularly terrified. She was depressed a lot, didn’t like raising lots of kids, or practically living at church. She didn’t feel “good,” but tried really hard to conform. She was so scared of the not knowing which soul she was given. She couldn’t sleep, was nervous all the time. She asked the church for help, guidance, but the Calvinist Church wasn’t exactly a loving church. She didn’t find any help at church, or anywhere else. She probably suffered from mental illness, probably needed therapy and loving support from family and friends, but in the 1630s, mental illness wasn’t mental illness, it was that you had the Devil in you. You were evil. She felt evil, but wasn’t certain. She wanted to be certain, she wanted to know whether or not she was damned, just so she could finally sleep at night. To that end, she took her youngest child, a baby, and she threw it down a well. That settled things for her, she finally knew what kind of soul God gave her and that she was absolutely, without a single doubt, damned. She actually felt a bizarre peace.

I don’t want to throw any babies down any wells, I actually love babies. Whenever I see a baby out and about, I always end up transfixed, I watch their little hands, their little eyes, searching, learning. I always think about how that baby could grow up to cure cancer, or write some spectacular novel, or hit liquor and heroin really hard and be dead by thirty, or whatever. Babies are possibility, they’re the essence of potential. Not being a Calvinist, I also see that baby’s soul as perfectly clean, I don’t believe in that born sinful stuff, Jesus got screwed over so babies don’t have to worry about that. I always look at some baby and think about how they’re not all fucked up yet, unlike me they’re completely perfect. So, yeah, no killing babies to figure out what kind of soul God gave me.

Still, I’d like some certainty about some things. Where am I going after I die? I say that first, but it’s actually pretty low on my Worry List. I just don’t want to die, I want to avoid the dying. I died once, it didn’t stick, I don’t want to go again. Sometimes I get really dark and want to go vertically open my wrists, but that’s more about not wanting to feel sad than actually wanting to die. It’s also different when dying is this circumstance that’s forced on you. If you’re accidentally drowning in pineapple juice (that’s what killed me) or the hose on your vent breaks while you’re trying to buy a four hundred dollar Tumi bag, the absolute last thing you want to do is die. You beg God not to let you go, you beg to be with one certain person one more time. You’re all, “I’ll be good, really, I promise.” At least, this is how I am.

I worry about the when and how of my dying, mostly the when. I’d really like to know the when, then I could quit worrying about whether or not I have enough time to make up for the bad things I’ve done, enough time to have what I want. and feel happy. I worry I’m going to go out like Kurt and Elliott, sad and fucked up. I don’t want my story to end that way, the way it is right now.

That’s what I worry about most, running out of time, I’m constantly aware of time. I feel time, like it’s something tangible, rushing over my skin. I feel this constant sense of urgency, especially now, because I know I’m not where I want to be, and I know I’m one breath closer to to not breathing with every breath I take. I wonder if I have enough time to find my way to someplace bright. I’d like to know because living with the mindset that every day could be my last day is actually really exhausting.

I wonder how many of those Tony Robbins, motivational, “Live like there’s no tomorrow” types, I wonder how many of them actually walk that talk. Living like that, really believing the words, it’s not easy to carry. When you want something, you want it like there’s a gun to your head, like, at any second that trigger could get pulled and you won’t ever get to that kiss, that I love you, that waking up somewhere beautiful until you quit waking up. People don’t understand why spending time together is so important to you, because your clock feels so much faster than theirs. For other people there’s always tomorrow for walking under stars or curling up in bed to watch some movie about a talking fox, and to you, both experiences are more important than winning a million dollars. Loss hurts more because you don’t believe that chances are unlimited, in your head, chances are like a pack of used bar matches, you only get so many lights. Sometimes it all get so heavy that you look for ways to stop thinking, to stop wanting, just for a few hours. Liquor bottles and drug needles do that trick, but they’re exactly that, a trick. They just make it so the clock disappears behind a curtain, but just like any magician’s assistant, the clock always comes back.

Once you actually know about these things, once you stop seeing the end of your time as some kind of fiction, well, there’s no not knowing them. A bunch of Nirvana songs end up making perfect sense. Like that Calvinist woman, lack of certainty makes peace hard to find. Such is true in my experience anyhow, but like I said, I’ll never toss a baby down a well for answers to questions that’ll probably come when I don’t answers anymore.

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So, a reader recently left this… awe-inspiring comment, then she e-mailed me just to make sure I got it.

Here we go…

I’ve been following your blog for a while and I am sorry to see how depressed you’ve been feeling. One certainly cannot blame you and I think I’d be having a change of mind about the trach as well. As someone who works in the medical field, I say without reservation that modern medicine is at times a blessing and also a curse – no question about that. Could you (would you want to?) communicate to your doctors that you want the trach removed and want to be DNR/DNI? If people can proactively decide not to be intubated, can you retroactively decide against a trach?

Just a friendly suggestion, but what if you started writing some sort of legacy pieces that are more congruous with where you are mentally right now? Maybe try writing your own obituary, advice to future generations, survival guide for families new to a SMA diagnosis, how to deal with a global environment that is fucked, how not to fuck up the colonization of a new planet, etc. It could be depressing, honest, depressingly honest, satirical..

After I stopped feeling like a turtle who got smacked in the head with a liquor bottle, after I stopped gaping at my e-mail client, I read it again. I did just wake up, maybe it was the tail-end of some fucked up dream, but no. It’s real. I’m writing about it, so it must be real.

First, let me acknowledge that I’m sure the commenter is totally well-meaning, totally “just trying to help.” Nevertheless, it’s also hands down one of, if not the most, disturbing things I’ve ever read. I’m not even sure where to begin discounting its wrongness, there’s just so much.

Modem medicine is a blessing, my trachis a blessing, I’m so beyond blessed to have this little plastic tube in my throat and doctors who take such good care to make sure I get to keep going. I would never in a million years sign a DNR/DNI, I can’t even imagine “retroactively deciding against” my trach. I like my tubes and hoses right where they are, and if I ever need more, I’ll get more. I’ll do whatever it takes to keep breathing, and I want all my doctors to share in that idea. I don’t think anyone with SMA has any business signing a “let me die” piece of paper, and it honestly scares me to think that anyone in the medical field would encourage such. We have assistants and assistive technology and traches and portable vents so that we can get out into the world and have the chance to live a decent life, just like anybody else. Nobody’s guaranteed a decent life, but so long as we’re still breathing, we have that chance. That chance to be someone’t best friend, someone’s lover, even someone’s mom or someone’s dad, if that’s the road you want to try. Signing some “let me die, don’t bother saving me” paper ends all of those spectacular chances.

Yes, I’m pretty down, way down, but that has absolutely nothing to do with my disability or general medical condition. I really hate how that’s such a quick, popular assumption, especially given the fact that nothing I write even implies such. It particularly disturbs me that someone in the medical field could make that assumption. It just shows that society’s expectations for people with disabilities are far too low.

I wrote about how it would have been better had that trach not gone in, I felt completely alone, and sad, missing someone who didn’t miss me, so I wrote how I felt, honestly, in that moment. I didn’t say, “I wish the doctors had quit trying to make that trach fit. If only I could walk, then everything would be so okay,” nor would I ever. That’s just stupid. I wrote about feeling like a fuck up, the weight of my mistakes. I didn’t want to feel that loneliness, that emptiness, so I wrote what I wrote.

People who commit suicide, or try to commit suicide, it’s not always because they genuinely want to die, they just don’t want to feel sad or lonely or empty, or whatever, anymore, and they don’t see a way past those feelings. If you feel bad enough for long enough, you just want it to stop. I’m in the unique position of having that bad thought, that genuine, “I’m going to go open my wrists” thought, then having no choice but to feel it until it stops. It does stop, it always stops, that’s why suicide is such a shame. People run out of time before that feeling stops. For me, before that feeling stops, while I’m feeling it, I tend to write it. I need to get it out of my head and put it somewhere else. I am down, really down, and I don’t know when that’ll end, but absolutely none of it has anything to do with changing my mind about the little plastic tube in my throat. I lost my best friend, I lost someone I love more than I could possibly explain. I’ve made mistakes, screwed things up. I feel like I’m drowning, I’m scared I’ve made too many wrong choices and I don’t have enough time to do things right. My trach, my disability, my general medical state, they are no source of regret.

I’m fucked up like lots of people are fucked up. Elliott Smith, Kurt Cobain, they wrote song after song that tell stories like mine, stories I know from experience. They didn’t write those songs because some doctor stuck a little plastic tube in their throats.

I will never, ever regret telling that e.r. doctor to do whatever he had to do to keep me going. I’d make the same choice a thousand times over. I’ll die when God figures it’s time, when there’s completely nothing left to save me. One day, a hose will break, or a trach won’t fit, or some infection will fill my lungs until I quit breathing, nothing anybody does will save me, but people will try, and I’ll want them to try.

Oh, and no, I won’t be writing any “legacy pieces,” like I’m already dead. I’m still here, I’ll keep writing about right now.

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I’m hearing my writer voice again, sort of this detached, unaffected voice in my head, a fellow who’s so beyond depressed that all that matters to him are words that are honest. I hate him. It’s a weird feeling, really.

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So, I watched Magnolia earlier, I really forgot its complete brilliance and beauty. It’s a long movie that doesn’t feel long, basically a series of interconnected stories, themes like, the past repeats itself, mistakes and regrets aren’t unique to the individual. It’s a fast movie in that the cuts between stories are quick, it doesn’t linger on one character’s life for too long. There’s also a lot of camera movement, not shaky Cloverfield camera, just lots of panning, zooming. The cuts and the camera give Magnolia a very fast-paced frenetic feeling, even though its thirty minutes shy of three hours long. It’s also a movie about really fucked up people, people dying physically, emotionally, people whose stories do and don’t work out. I was watching with a friend and she asked, “Are people really like that?” I didn’t feel like putting down the words, I just eyebrowed a “yes.” There’s a scene with Philip Seymour Hoffman, he’s a Hospice nurse trying to track down this dying fellow’s estranged son, trying to fulfill a final request. His son, played by Tom Cruise, turns out to be a pretty famous, pretty vile, motivational speaker, teaching loser guys how to have lots of sex with lots of women. So, Seymour Hoffman’s on the phone talking to one of Cruise’s underlings and says something to the affect, I know this is something like a scene from some movie, but I think movies have scenes like this because this actually happens. I mean, that’s so much of why we go to movies, because we identify with what we see, or we want to do or be what we see. I answered my friend with a “yes” because my experiences have been so much like the characters we were watching. Depression, loneliness, addiction, loss, regret, I know those experiences, felt them, feel them, been drowning in them. Yes, people really are “like that.”

Magnolia’s soundtrack is another reason I love it so much, Aimee Mann contributed most of the songs, specifically written for the movie. One particularly unusual, very moving scene, cuts to each character singing Wise Up. My favorite line, “You’re sure there’s a cure, and you have finally found it. You think one drink will shrink you ’till you’re underground and living down, but it’s not going to stop, it’s not going to stop, it’s not going to stop ’till you wise up.” It’s very surreal, but the scene totally works. It hit me really hard, I broke-down, sobbing. I breakdown quietly, nobody ever notices. Almost nobody. Listening to Aimee’s lyrics, crying, it reminded me of something.

It was four years ago, I was with Sara, my girlfriend then, kind of. We’d broken up, but started finding each other again toward the end of shooting our This American Life episode. So, she wanted us to go see a Chris Isaak concert, and I just wanted to go anywhere with her. The trach was still a little fresh back then, I’d still get nervous going out sometimes, so I’d have wine or brandy before getting into the car. Not the best way to cope, but it worked awhile. I didn’t want to not take her, I didn’t want to be weird and nervous, I just needed the crutch to get there. It wore off and I realized I was okay because I was with Sara, everything was always okay with Sara. So, we’re leaving the concert, which was great, we’re walking back to the car under a summer night-sky. I look up at the stars, bright beautiful stars. I didn’t want to be anyplace else, just right there, under those stars, with Sara. As we’re walking she takes my hand and out of nowhere starts singing Aimee’s You Do, off the Magnolia soundtrack. And you do, you do, you do, you really do… I never thought I could love her any more, but holding her hand, listening to her sing under those stars, I did, and I felt so completely loved. I quit the pre-outting drinks after that night. I didn’t need them, and we went so many more places together. We held each other and sang so many more times. Losing her hurt so much.

I never thought I could find again what I felt with Sara, but I did, so intensely, so beautiful, but that’s gone too. Losing Monica hurts so Goddamn fucking much. I don’t know how to be okay.

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So, I’m trying to post more, I’m making a concerted effort. Really, I’m making an effort to set life right again. When life feels good, the writing follows. The last few months have not been stellar. Honestly, it’s been more than a few months. I’m ultimately responsible for my life and making it comfortable, it just gets exhausting when things don’t go right for a long enough stretch. Depression sets in, which really doesn’t help make anything turn good again, it just feeds the slump.

I’m waking up, I think. I’m trying harder, at least.

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I’ve really hit a creative, just everything, every part of me, low. I’m so low, or as Tori Amos would put it, way down. I’m supposed to be better than this, I was anyways. Maybe I’m just not, anymore. Who knows?

To me, the song is about how artists practice their craft in spite of criticism, scrutiny, and the pain one feels from being struck by such weapons. People who are passionate about their craft, whether it’s visual art, or music, or writing, they feel a drive to share what they create, to put it out there for anyone to take in. Sharing such creation opens one up to not only praise, but also harsh words and deep criticism. It can be painful for one to have what they create knocked and dismissed, spoken badly of, but that drive to create and share outweighs any feelings of pain that come from practicing one’s craft with absolute honesty. Creation for the sake of creation, whether anyone likes it or not. Alanis writes songs that make people uncomfortable, some just flat out don’t like her, and that dislike hurts, but she simply can’t not write those songs. She can’t not be herself and create with complete honesty.

Whenever I write about depression, or suicide, or sex, or derision toward God, fictionally or otherwise, it is likely to upset someone (especially people close to me). Honesty in writing, particularly when it comes to personal subjects, isn’t always welcome, but this is what I do and I can’t not do it. No matter how much I hate any personal fallout the things I write can cause, this is my craft and I can’t not practice it.

Really, I have something deep inside me, something that pushes me to do things no matter what. I can’t not do things like, tell a woman how completely I love her, even though she might not love me back, or look into her eyes and tell her how much I want to kiss her, to take off all her clothes for the first time. I can’t not travel and experience things, even though something could go astonishingly wrong with the machines, and hoses, and tubes that keep me breathing. I almost died going to a movie last December, but I can’t not go, and do, and be. I do things because I can’t not.